The Miracle of a Day

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All-day, it continues. Little blessings like a cool breeze coming through the open window. The light as it shines and brightens the whole room. I enjoy the fresh banana and nonfat yogurt with a cup of tea. The guided journals are encouraging gratitude, gratitude, gratitude. I receive a kiss from my husband, a soft word, some days a love note placed in the red mailbox we bought in the dollar section at Target.

All-day, it continues. A phone call to my parents still alive and doing well even with chronic conditions like Parkinson’s and leukemia. A snack of hummus and pita bread or Ritz crackers out of the box.

All-day, it continues an e-mail from a student saying, “Thank you.” A paycheck from a class I taught arrives in the mail. A text from one of my brothers or a friend. Plans to share a brunch date over Zoom to celebrate a friend’s birthday.

All-day, it continues. The smell of a tree with white flowers blooming just outside my window. A swarm of bees pollinating the plants. A dog barking as its owner plays fetch with it on the grass patch across the street.

All-day, it continues. My favorite pair of sweatpants and a worn-out t-shirt with soft cotton plush socks. A poem that I think is profound or beautiful or both. A photograph on Instagram of trees turning orange, red, yellow. The air pollution calculator is on green indicating the quality is good today.

All-day, it continues. Something sweet like oatmeal and chocolate chip cookies or a piece of dark chocolate with mint. My husband’s and my guilty pleasure of Red Vines while watching our favorite comedy series.

All-day, it continues. These little blessings. One pound less on the scale, making my BMI in the normal category. The sight of my toenails painted pink. My husband puts my hair up in rag curls. I finish a workout on the stationary bike. I stretch my body for thirty minutes easing some of the aches and pains.

All-day, it continues. I smell bread baking or the scent of a vanilla candle. I feel fabrics so soft on my skin or the touch of my husband. I see the bay out of the dining room window. I hear music from Pandora or YouTube. I taste fresh food like watermelon, apples, or beets.

All-day, it continues these little blessings that spring up everywhere along with each breath making me want to reach up and grab ahold of the sky.

I Can’t Do That Anymore

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I attended a virtual event yesterday about mental health. I was supposed to give my input, but I didn’t know exactly when I would be speaking. After an hour and fifteen minutes, I needed to log off because adrenaline had been pumping through my body the whole time, and I was sick from it. It took me an extra dose of medication and two to three hours to get back to a place of feeling okay.

One of the worst parts of this illness is the desire to do things that I cannot do. I want to feel 100% all the time. I want to be able to speak at events, travel, visit friends and family, attend conferences and workshops, but so often, it isn’t possible for me.

It is hard to accept that I was unaware of any limitations that held me back for much of my life.  I did what I wanted to do. I went where I wanted to go. I took jobs that I wanted to do. I flew overseas at the drop of a hat. I was strong and capable and didn’t even consider that the things I was doing were difficult or impossible for some people.

Now, I live with many limitations, but the reality hasn’t caught up to my desires. I still see what I want to do and try it, and often it turns out terribly. I don’t want to be someone who never tries new things or says no, out of fear of a negative result, but when things go wrong, and people are counting on me, or I have my hopes up, I feel like a failure.

I think many people are like I used to be. They are unaware that the everyday things they do are impossible for some people. I think this makes people less forgiving when those of us with an invisible illness say, “I can’t do that,” or “I’m having trouble and need to leave.”

It is easy to judge people and consider them unreliable or flakey or incompetent or even someone who lies about why they can’t do something. I hope that I have learned from personal experience that not everyone can produce at the same level, have a busy schedule, go to every event you or me, or others can.

I need to extend more grace to those people who have a more difficult time than I do. I need to believe that they are doing the best they can. I hope others will extend that grace to me and realize that I wish I could do all the things, but that simply is a life I have to let go of and accept that I struggle mightily with so much.

Let’s try to believe what people say, show compassion, and think the best of one another. I need this reminder, and I think some others do as well.

Let’s Not Forget

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Let’s not forget that, along with a year that many call a dumpster fire, there is still the ocean. Sharks and whales and orcas. I heard that a white orca was off the coast of Alaska. Remember, the orca that carried her dead calf around for two weeks or more? That orca has a new calf. I try to imagine her grief not entirely lifted, but the joy of swimming in the pod with her new baby very much in need of her, and very much alive.

Let’s not forget that chocolate is still delicious or vanilla if you prefer that. Last night we froze pumpkin pie to take out slice by slice whenever we need the comfort of the taste of Fall.

Let’s not forget that we have people who care about our well-being and if we are okay. I’m not doing okay each moment, but I still see each morning I open my eyes as a miracle, a wonder, a gift. How did I make it to fifty-five? That young girl who once smoked a pack of cigarettes a day skipped school, got called into the principal’s office. Teachers were so frustrated they lost their composure and yelled at me in class because they knew I was ditching, and I forgot a pencil or pen to a shorthand class. “Who does that?” My mother-in-law would say. I do. I did. I was.

Let’s not forget that people still say I love you and mean it. People even buy each other coffee or pay for a stranger’s meal.

Let’s not forget that most Americans are kind hearted people who would stop and help someone struggling. Maybe they would assist the elderly with their groceries or help a lost child find their parent.

Let’s not forget we are a people who smile when walking past people on the street, a practice my in-laws from France think is foreign.

Let’s not forget all of this because it adds up, and it’s not nothing.

I’m Learning New Skills, but I Still Cry Everyday.

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It has been over two hundred days since I had my hair trimmed, went to a grocery store, or ate in a restaurant. I’ve hardly been outside of my neighborhood in the past six months. Many people have gone back to work (or are essential workers and have always been working). My house has not returned to anything close to what it was like in January of this year.

In some ways, this pandemic is trying and challenging. In other ways, it has brought hard work and some much-needed tools and healing to my life. I thought that I was an expert in self-care and managing my schizophrenia symptoms the best way possible, but it turns out I had so much work to do and so much to learn.

Before the pandemic, I took my medications regularly, monitored my sleep, made sure to exercise at least five times a week, and ate at least five servings of fruits and vegetables every day. Along with these things, I wrote in guided journals, had regular appointments with my psychiatrist, and watched my stress levels closely. I still had symptoms, but I thought I was doing the best I could to manage them.

In March, I started seeing a therapist, she didn’t work out for me, and I began to see a therapist who works in my psychiatrist’s office in May or June. She was only allowed to work with me for twelve weeks, and during that time, we worked on tools to manage my anxiety disorder, healing shame, and healing trauma.

I never realized how much work I could do to lessen the impact of my anxiety disorder. It never occurred to me that so many thoughts that I had made me spiral into negative territory and have bad days. I also never realized the level of shame I carried. Although the shame comes from more than my schizophrenia diagnosis, that label alone and its weight can harm mental health.

Of course, not everything is rosy. I cry at least a couple of times every day. I don’t sob. I simply cry a little at the state of the world, the deaths, the stress of constant hand washing, and mask-wearing, and not being able to see family or friends (it has been over a year since I saw my parents or any of my siblings). 2020 has been a tough year in so many ways, and I find I worry about things that were never part of my reality before.

On the other side of that, my resting pulse rate has gone down between ten and twenty points (depending on when I take it), and my blood pressure is lower than I can remember it being in the past. These are the genuine health benefits from working on anxiety. I still have panic attacks, but they are less severe and are over in far less time.

The tool that has had the biggest impact on me is sticking to a regular writing practice. I have written regularly for the past six years, but I wasn’t writing every day. Something about sitting down every day and doing automatic or expressive writing has acted like a pressure valve releasing the steam before the pot boils over.

I have been using a writing technique I learned from a woman whose name is Laurie. If you want to join me in a group where I use what I have learned from her, please get in touch. I plan to run several groups starting soon, and I would love to have as many of you as possible write alongside me.

A Simple Message and a Writing Group

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There are times when a message so simple, delivered at the right time, can have a profound impact on our lives. I happened upon one of those messages yesterday. During the pandemic, I have tried to spend time working toward healing and bettering my responses to events and circumstances. I have watched every YouTube video by Brene Brown (if you haven’t done this, I highly recommend it). I also bought several workbooks on healing trauma and emotional regulation. Added to that list are two books by Brene Brown (because there can never be too much good advice and great stories).

Anyway, yesterday, while doing a CBT (Cognitive Behavioral Therapy) exercise, I ran into an explanation about fixed thinking and labels. Fixed thinking ( like saying, I have a terrible memory, or I am awful at math) doesn’t allow for growth. It leaves the person saying those things stuck. If, on the other hand, a person has an attitude of development, they will try math and try to get better at it, or practice techniques to improve their memory, etc. This type of thinking provides for a change instead of the more rigid fixed thinking.

One part of what I read yesterday was about labels and how labeling ourselves is falling into the trap of fixed thinking. Here is the most important statement that rocked my understanding of my illness and myself. The writer said being diagnosed gives you a label.

These past six years of writing publicly about schizophrenia, I have often tried to get other people to see beyond my diagnosis. I have written how I am a partner, a sister, a friend, an aunt, a daughter, etc. The whole time I was writing those words, I was labeling myself as someone with schizophrenia.

Labeling myself as someone with schizophrenia is fixed thinking. It can cause me to believe that it is something about myself that won’t get better and will never change. How I am today is unlikely to be how I will be tomorrow. I can learn to manage my schizophrenia better. I can learn more coping techniques, and equally important, I can add more interests and hobbies to my life. By adding hobbies or passions to my life, I may find things that I identify with more strongly than having schizophrenia. Having a big and complex life gives schizophrenia that much less meaning. It takes it out of the driver’s seat and puts it in the trunk among all the other odds and ends that get tossed in there.

As an example, I am spending much more time writing during the pandemic, and I am spending much more time teaching three different writing courses. Teaching and writing define much more of who I am than the fixed label of schizophrenia.

To continue along those lines, I want to create a community of writers who meet on Zoom once or twice a week. I would have to charge a small fee to cover costs, but I would make it low enough to be accessible to almost everyone who wants to participate. I have found writing in community has helped me generate many words on the page these last six months. If you are interested in being a part of a writing community please contact me with the days and times that work best. I will post again about this soon. Please get in touch if you want to take part in a powerful writing practice that helps you make writing a central practice in your life. The writing you do can be healing, centering, therapeutic, and spark more and more creativity. Reach out because I would love to have you. 

Looking Past the Cracks

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Like everything else, I have a crack in me. I think Leonard Cohen said that the cracks let the light in. I don’t know if anything about schizophrenia is light or a silver lining. I doubt it. I doubt the hallucinations, delusions, anxiety, lack of motivation, voices, psychosis in general, can be seen as positive. I would challenge the person who tried to make light of these things, but that isn’t to say that the crack in me can’t be handled with creativity, with uniqueness, with a type of resilience that makes me, not the crack, shine. Schizophrenia will never be the light, but the things I have faced, the difficulties, the obstacles, can make light of me. I am light. I shine.

Like everything else, I have a crack in me, and although my crack isn’t something I would want for others, I am stronger because of it. I am kinder because of it. I see the suffering of others and don’t turn away. I can meet suffering head-on. I can sit with those who suffer and give them space, hold their hand. I’m no savior. I can’t save anyone. The self must do all the saving. The desire to pass through, to heal, to move on.

Like everything else, I have a crack in me, but I am not the crack. I contain the crack, but it isn’t the sum or total of me. I am compassionate. I am creative. I am spiritual. There is a world inside that contains the crack but isn’t defined or made by it.

Like everything else, I have a crack in me, but I can still sing my favorite song. I can still hold hands with my husband as we walk down the street. I can always write poetry and prose. I can call a friend. I can play a video game and get excited about being one point or fifteen points ahead. I can try harder when I am behind.

Like everything else, there is a crack in me, and it’s not that it is small or insignificant. It’s not that it is hidden or that people can’t see it. It’s not that I don’t need to manage or take care of it. All of those things need to be, but it is that it is a crack, only a crack, not a break, not a missing piece, not a lost part, not smashed or completely broken, ruined of flawed.

Like everything else, there is a crack in me, but there is so much more to this container than the piece that the light can get through. I am an adventurer, a traveler, a human being complete, and full.

Like everything else, I have a crack, but it isn’t the most interesting thing about me at all. Not even close. A crack is a crack, and we all have some. Mine is just this way, and yours is another. Let’s not spend too much time there.  

My Sixth Year Anniversary

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Yesterday, I received a notice from WordPress that I started my blog six years ago. That means that I came out publicly with my diagnosis six years ago and started to write about living with schizophrenia.

A lot has changed in six years. When I first started my blog, I was one of only a few dozen people writing about schizophrenia. Now, I see YouTube channels, new non-profits (created by people with schizophrenia), and many Instagram accounts that deal specifically with the illness.

The whole landscape has changed, and I have to say I think this is good news. More people talking about schizophrenia and writing about it and being open about symptoms and what life is like can only have a positive impact on those of us who struggle to live our best life. I hope that increased awareness also impacts treatment for those on the street and in prisons.

To have those who are sheltered and work diligently with therapists, psychiatrists, support networks, and have access to medication, write about our lives helps reduce stigma and stereotypes, but does that translate into a better life for the most vulnerable among us?

It seems that even Hollywood might be taking notice that many people can have dreams, relationships, and get an education, or work while living with a brain illness. The new movie Words on Bathroom Walls is an example of that.

Although we have made incredible progress, I continue to hear stories from those caring for a loved one with schizophrenia that getting treatment is still hard to manage. Law enforcement continues to be first responders during a mental health challenge or crisis.

I’m grateful beyond belief that after six years, more opportunities continue to open up for me, but that doesn’t mean that I think the mental health landscape is beneficial to all those who desperately need treatment.  

As those of us who have support, treatment teams, and can manage to write or talk about our illness (when asymptomatic), I ask for you not to forget those who are in jails and prisons across the country. Prisons are still considered the most extensive mental health facilities in the United States. I also ask you to remember those without shelter who are struggling alone and possibly far away from people who care about them and might be willing to help them if only they knew their location.

It’s great that so many of us can give hope to the recently diagnosed and parents of children who receive the diagnosis and change the old boxes that society had us in. On the day after my blog’s birthday and a life I never imagined I be living (out in the open), I have one request: That all advocates work for a better life not only for those with the most but for those with the very least.

Happy Birthday, A Journey with You: Surviving Schizophrenia.

There is Proof

There is proof that we are still alive. The coffee pot and teapot are in a different place on the counter each morning. Clothes disappear from the closet and end up on the bed or in the hamper. Dishes are removed from the cupboard, stacked in the sink, rinsed and loaded in the dishwasher, then back in the cupboard. Over time, the soap bar gets smaller. Shampoo bottles have less and less shampoo. Razors get dull. A book, magazine, papers are in different places around the room. The quilt on the chair is higher or lower than the day before. The bed has one more bump or crease than it did yesterday.

Plastic containers get placed in the refrigerator and are half full of zucchini, carrots, hummus, salad, rice. The jar of peanut butter has less in it than the day before. Each morning, the fan is in a different position. The soil of the mint plant is damp from a recent watering.

Grease spots come and go on the surface of the stove. A gallon of milk in the refrigerator has less liquid in it than earlier in the week.  An empty bread bag is on top of the trash. The overflowing recycling bin makes it difficult to close the cabinet. The kitchen towels change colors and patterns every few days. Bananas disappear from the counter.

Journals and diaries scattered on the table near the reclining chair get moved daily. The window shades go from closed to open each morning. The tube of toothpaste has less paste in it. There is a new pile of paper on the couch. The remote control is in a different place every day.

There is proof that we are still alive even though we can count the times we have left this space over the last one hundred and fifty days on our toes and hands. There is proof that we are still alive during this global pandemic because each day we wake up and say good morning recognizing and thankful that we are still here.